Wednesday, December 23, 2009
Merry Christmas everyone! And to all who are grieving or going through difficult times, may you be warmed by the loved ones around you and comforted by God's presence and love.
Thursday, December 17, 2009
Monday, December 14, 2009
Thursday, December 10, 2009
Wednesday, December 02, 2009
Tuesday, November 24, 2009
Engage With Grace is a movement aimed at having all of us understand and communicate our end-of-life wishes.
Their original mission- to get more and more people talking about their end of life wishes- hasn't changed. They thought they'd try something different this year: a bit of levity. The rest of this post has been copied from Engage With Grace.
"At the heart of Engage With Grace are five questions designed to get the conversation started. They're included at the end of this post. They're not easy questions, but they are important.
To help ease us into these tough questions, and in the spirit of the season, we thought we'd start with five parallel questions that ARE pretty easy to answer:
Silly? Maybe. But it underscores how having a template like this, just five questions in plain, simple language can deflate some of the complexity, formality and even misnomers that have sometimes surrounded the end-of-life discussion.
So with that, we've included the five questions from Engage With Grace below. Think about them, document them, share them.
Wishing you and yours a holiday that's fulfilling in all the right ways."
Saturday, November 21, 2009
The long and short of it led to a discussion about respite placement. Medicare provides 5 day respite care at a long term care facility under the hospice benefit. We all know how much I hate setting these up but it seemed to be the best option here. The daughter did not want her mom to have long term placement but the 5 day break would allow her to rearrange some things at home (for instance moving her mom's DME downstairs) and have a break from her care. It would also help her figure out whether she could afford to hire a CG (very limited finances and they were already getting assistance from the county) or if another relative would step up to the plate. There's one LTCF that typically makes respite an easy process and it happened to be close by. I called the admissions director and they said they did have respite beds available. I had the information faxed over at 1 pm and prepared to wait. Usually you hear back within an hour or two if the LTCF will accept a patient for respite.
In the meantime the patient had some other medical issues going on. The MD ordered a blood culture and an ABT was going to start. The RN had me call the admissions director to let her know about these new issues and what we were doing to resolve them. It was after 3 at this point; I felt I should have heard something by now. When I let the AD know this update, she asked me if I'd faxed the info over yet. I nearly had a heart attack! It turns out it was still in their fax machine and no one had brought it over to her nor had she gone looking for it, even though I stressed that this respite needed to happen fast. This was mind boggling! She said she'd go review it with the DON right away and get back to me. She called back a half hour later with some questions which I clarified. Then she called back 10 minutes after that saying they needed info on the Pleurex catheter even though the hospice RN would provide care and it didn't need to be drained for another week, which would not happen during the respite. At this point I was beside myself- it was almost 4 on a Friday afternoon, time was running out. I asked her if this was going to happen or not. She wouldn't give me a straight answer but noted that it was close to the end of Friday the weekend before a holiday. I had the office fax over the Pleurex catheter info and my supervisor called over there at my request to review it. Finally at 5 pm we got the answer that they would not take the patient tonight or tomorrow (because they had a complicated patient being admitted) and would only say "maybe" for Monday. Basically we were screwed. The odds of finding an admissions director still working at this time who would be willing to work on a respite placement for tomorrow were very slim. Trying to arrange a respite on Saturday morning is near impossible (I managed to do it once but it took about 7 hours of work.)
We decided to talk plan B. The daughter didn't want the patient to go to the hospital for an in-patient admission. She thought she could get a relative to come over and help over the weekend. A hospice RN would visit Saturday and Sunday. We would try to arrange respite on Monday. However, the MD didn't think that was good enough and pushed for in-patient. When the daughter still refused, the MD demanded that I arrange respite...tonight. Um, hello? I've never been a fan of this MD- she may be great with patients but she micromanages other staff and bullies them- and we don't even work for her! Still, I called a couple of other places. One admission director was actually still there, miracle of miracles, but they didn't have any respite beds. Other places had no admission personnel available. It was 6 at this point and the patient had another change in condition with audible congestion. RN Deb was back at this point and it was determined that the patient was actively dying.
Gears switched again. The daughter was committed to caring for her mom to the end and in their home. Continuous care was arranged. The daughter had a friend come over to offer support. I left their house about 8 pm with everything in place. I commented to Deb that I hoped the patient wouldn't die tomorrow (really today, as I write this) as it's the daughter's birthday. She shared a story from working with another family. It was going to be a family member's birthday and she told them she hoped the patient wouldn't die that day because of it. The family surprised her by saying they hoped the patient would die on the same day. Apparently they are of a religion that believes that the day you die is a celebration (let me know if you know which religion this is.) To be able to share a birthday with someone's death day is very special to them. It's the idea of birth and rebirth. Such an interesting way to frame death. But I still hope this patient doesn't die on her daughter's birthday. Of course, it isn't up to me or the daughter. We'll have to wait and see.
Thursday, November 19, 2009
My maternal grandparents have 12 siblings each, creating a very large extended family. Unfortunately, this side of the family also has quite the health history, including just about every kind of cancer you can imagine. Consequently I've been to my share of funerals starting at a young age. In fact, my mom recently told me I was just a few months old when I went to my first funeral. I don't think I knew any of the deceased very well at that time. I would say the first time a relative died where I felt affected by the death was my great aunt Jean (not quite sure how old I was, probably between 8 and 10). Despite the sadness associated with funerals, I actually think it's great that I was exposed to death at such a young age. I was able to see grown-ups model healthy ways of expressing grief and also learn that death is a part of life. These are both lessons that children will learn at some point in life; it does not help to shelter them from those realities.
The first funeral I remember was for my great-grandmother when I was in first grade. The church and potluck after are hazy memories. What stands out to me is what happened after that. My mom took the potluck leftovers back to my grandparent's house to put away while my grandparents finished visiting with people. She, my brother, and I arrived only to find that the house was locked (they never locked their house as they live in a farm community and this was the mid1980s). It was a hot day. There were concerns of salmonella if the food didn't get into a refrigerator soon. My mom demonstrated her talent for breaking into houses, however, and spied a window in the garage. She drove the car next to the garage and then- cue music- hoisted me through the open window so I could open the garage door and let everyone in. I remember thinking how great it felt to help other people. (The funny part of this story is that after all that, the back door was also locked- this door was definitely never locked- so my mom ended up taking out the window air conditioning unit and pushed my brother through.) Mom told me when I was little and someone got hurt on the playground, I would always run over to them and try to help. She thought I would end being a nurse.
When I was in 5th grade, my brother's best friend M was diagnosed with brain cancer. They were in 3rd grade at the time. On bad days, M's mom would call and ask if I could play with M's younger sisters. While I provided distraction from the tragedy unfolding downstairs, M's parents could focus on his pain control and spend precious time with their dying son. M died later that year. It was also around this time that I discovered Lurlene McDaniel books. McDaniels writes books about children with terminal illnesses, sometimes they do not survive. Being there for M's family in my own way and then reading about people who worked with terminally ill children led to my interest in someday working with that population.
The next notable death was my great-uncle Carl when I was 14. He had brain cancer and stayed at my grandparent's house during his final months. My grandma was his caregiver and they did get hospice (although she told me later that the support they received while Aunt Teresa was on hospice in 2006-7 was above and beyond the hospice care that existed in 1994. I don't remember anything about Carl's hospice experience, but my family always called Grandma the original hospice caregiver. Grandma was always taking care of others and I'm sure this rubbed off on me too.) Uncle Carl was a strong Christian and this strongly influenced his attitude regarding cancer. This in turn impacted my own faith and got me back on the right track with God. As I got older, I naturally formed stronger relationships with my extended family and friends, a very positive thing. But this also meant I was exposing myself to more loss. Through it all, I continued to feel that it must serve a purpose.
Starting in high school, I realized that I was a gifted listener. Friends were always coming to me for advice- even on matters with which I had no personal experience. It seemed that I was destined to be a counselor. Only I decided that I would be an English teacher, thanks to my lifelong love of reading and writing. I even convinced my favorite English teacher to let me do an independent study with him. I developed 3 lesson plans for sophomores during the first semester of my senior year. Mr. H. even adopted one of my lesson plans into his curriculum! I chose my college based on its excellent reputation for secondary education.
Still, I couldn't shake my interest in psychology and cancer. I signed up for psychology and sociology classes. An assignment for my sociology class was to learn about a job in the field. Thanks to a connection, I learned about someone who was a social worker at Children's Memorial Hospital. I was absolutely entranced by the job description but I didn't change my major until the end of the year. My college didn't have a social work program so I became a sociology major with a social welfare concentration and a psychology minor. I briefly volunteered at a children's grief group until life circumstances intervened. While I still wanted to work with terminally ill children, I thought it was important to explore other areas of social work. I started working in residential care with teenage juvenile delinquents before my senior year of college. While I enjoyed developing relationships with the girls, it was exhausting work and reinforced my interest in health care social work.
Somehow I landed in an awesome MSW program for grad school. My first year fieldwork placement was at a county health department in their Family Planning and Prenatal Clinic programs. We had to interview for our second year fieldwork placements and while I looked into and interviewed at a couple of hospitals, I ended up at a hospice in the city. I found that hospice was a good place for me. By virtue of my background, I was already familiar with many types of terminal illness, I offered a calming presence and a listening ear, and I found myself able to advise people in their darkest hour. I found the purpose in having experienced past losses- I could finally help others with what I knew. I never envisioned myself in hospice, much less enjoying the work, but it seems like a perfect fit. I love hearing life stories, soaking up their wisdom. I even love the perspective that the crazy families offer: gratefulness for my wonderful family and network of friends.
I like to tell people that I did my fieldwork placement in hospice and never looked back but that's not entirely true. I'm still interested in working with terminally ill children and I'd like to do more bereavement work. What is true that I feel called to my job without a doubt. While I don't always understand what it is within me that connects with the ill and grieving, I strongly believe that God has gifted me to do this and that He gives me the strength to do it. I am grateful that my experience in hospice was helpful to my family while my great aunt Teresa and Grandma were under hospice care. As difficult as that time was, I believe that God placed me in my job for that very reason. I don't know exactly what the future will hold but it'll be interesting to find out.
Tuesday, November 17, 2009
For instance, I tell patients that I'm there to provide emotional support, which includes stress management, developing coping skills, and offering a listening ear, as well as normalizing their experience. I also assist with long-term care planning and linking people to community resources. I can guide them with funeral plans and help set up Advance Directives. I assess their need for a hospice volunteer and/or pet therapy. I facilitate life review, provide prebereavement counseling, and encourage self-care for the caregiver. I provide respite at times. I read to patients, play music, lead them through guided imagery exercises, and provide companionship. I help with goalsetting and improving quality of life. I tell families that my role is the most flexible and that if I don't know the answer to their question, I'll find someone who does. Mind you, most families get the condensed version of all this!
Of course, there are times that my role doesn't fit the social work stereotype. The hospice team roles can blur. I figure I am there to help even if I'm not the RN/chaplain/handyperson. I don't do anything above and beyond my own abilities and I keep ethics in the back of my mind. But if someone needs help, I'm going to do it. So here's an incomplete list of other things I've done over the years that don't quite fit in to my normal job description:
-Moved furniture (making room for the hospital bed or setting up a TV in the patient's new room)
-Held a patient's leg up while the RN changed a dressing on his gangrenous foot (this has ensured that I will never ignore a cut and I will always take the prescribed ABTs)
-My Bucket List patient (almost skydiving, going to Springfield, etc.)
-Helped families dress their loved one after death before the funeral home arrived
-Helped RNs reposition patients in bed
-Sung hymns with families at vigil
-Prayed with the patient at their request
-Discussed a patient's bowel regimen at length. I hope I never care that much about my own habits!
-Helped with computer tech issues for the technology-challeneged and typed correspondence for the visually impaired
Hope you enjoyed this behind-the-scenes look. Any examples of blurred lines in your respective professions?
Thursday, November 12, 2009
From the website:
"These honest, first-person accounts lend amazing depth to the inspiring stories of these young men and women. Inside, you'll meet Zac York, who tells of climbing Mount Whitney-on crutches-after battling brain cancer. You'll meet Alex Oden, who-just days after brain surgery-gave his 8th grade peers a graduation speech called "A Day Well Spent," in which he challenged them to make a difference in just one day. You'll meet Kristen Jones, who, while battling leukemia, was able to pass the MCAT and pursue her dream of becoming a pediatric oncologist.
Twenty unique and fascinating stories, with one common theme: perseverance. The stories of these heroes demonstrate how anyone can learn to live with energy and passion, regardless of the obstacles to be faced, and will remind us all that now is everything."
Tuesday, November 10, 2009
Regina Holliday began creating a mural protesting the healthcare system 6 days after her husband Fred died. She and Fred both believed the system failed him in his fight against kidney cancer. "It's a wonderful therapy and relief to get to paint," said Holliday. "To get to do this has been a wonderful dialog with the public. I mean, people often come over here. They look at the mural. They want to talk about it and they often share their health stories."
The note in Fred's hand states "Go after them, Regina, Love, Fred." Symbolism in the mural includes a clock with no hands (normal time seems suspended in a health emergency), a nurse at a computer with the dark screen (records not shared with patients), and a doctor with her hands tied (miscommunication in the healthcare system). No matter what you may think about healthcare legislation, there is no denying Holliday's voice or her husband's story.
Monday, November 09, 2009
A former high school football coach
An author being cared for by her 30 year old daughter (I try not to imagine myself in the same shoes)
A man who stood up the Mafia 40 years ago and still lives- though he wouldn't put it past them to come looking for him
A restaurant owner in the process of handing the reins over to his son
A spitfire of a woman who raised a family and worked her whole life, who refuses to believe that cancer will take her down in the end
A former cop who became an auction assistant after retiring. Hoarder that he was, he took home any unsold items...his family is having quite the task of clearing out his home
A structural engineer who designed some of the expressways in Chicago back in the day
I love listening to everyone's life stories and hope that my own history will be similarly rich someday.
Thursday, November 05, 2009
If you don't have time to peruse the post, at least watch this video about Baxter the Therapy Dog. The Medical Futility Blog found this kleenex-worthy story.
Baxter died October 16, 2009 at age 19. He is rightly described as the world's best, most devoted, and oldest therapy dog. He volunteered with San Diego Hospice for 7 years. Melissa Joseph, Baxter's mom, has written a book about this amazing dog, Moments with Baxter. If your hospice or palliative care program does not already have a pet therapy program, I would highly encourage you to consider it. Pets have an innate ability to touch a person's life. Joseph's website has information on therapy dogs or you can look at Therapy Dogs International. TDI explains the benefits for hospice patients this way: "The sight of our dogs and the touch of their fur often brings peace and joy to those patients whose life once included animals. Physical contact has a calming effect and dogs have the ability to bring back pleasant memories of a person's life. Therapy dogs help combat loneliness and they give people the chance to have something to look forward to. Exposure to our dogs allows the patient to feel needed and wanted at a time in their life when death is evident."
Wednesday, November 04, 2009
Below is the Today Show interview with the Desserich family.
Monday, November 02, 2009
It is an interesting process to read a book aloud. Sentences that make sense while you're reading to yourself sometimes sound awkward when read out loud, especially when it comes to what I like to call "fluff books." Fluff books are enjoyable to read but either lack depth or are poorly written with interesting plots. The book I'm reading to this patient is definitely a fluff book. It's a science fiction murder mystery and it's interesting. I try to properly pronounce the futuristic technology but she seems to appreciate even when I get it wrong.
I usually do not edit any book that I read to a patient, with one exception. I do not use the F-word. I think it's a waste of a word and generally something else will suffice. So when the F-word is used, I substitute it for something else. I don't feel bad about this because Robb/Roberts used the F-word in one sentence and then changed it up to "fricking" the next sentence. No big deal, right?
What about reading sex scenes to a patient? I should have known that there would be a sex scene where Nora Roberts is concerned. I'm reading along when the character's husband comes home from his business trip. They're very happy to see each other, if you know what I mean. As I continued to read, I was freaking out in my head. This is so awkward! Is this even appropriate to read to someone? Should I just skip a couple of pages? Maybe this patient likes the author because of the sex scenes- then I would be depriving her. In the end, I did read the sex scene, albeit as quickly as I could. And now I just hope that there won't be any more in this book!
So what do you think? Is a little editing OK here and there? Would you have read the sex scene to a patient?
Update: Before reading further to this patient, I asked her specifically if she wanted potential sex scenes to be read to her. She quickly answered "yes, please do!" And there we have it. From now on, if I'm reading a book selected by the patient, I will first ask them their preference regarding cursing, sex scenes, and violence.
Friday, October 30, 2009
"Originally, "to palliate" meant "to cover with...a cloak" (Oxford English Dictionary, 1989, vol. 11, p.101). This meaning can be seen in the practice of covering the casket at a funeral with a cloth called a "pall.""
This is nothing new in itself but reading anew where the term "pall" comes from took me back two years. A few days after my great-aunt Teresa died, my grandparents were busy finalizing the funeral arrangements. I was at a track event from one of my youth group girls and I remember it being an unusually chilly Saturday for April. Somehow I had the foresight to turn the volume on my cell phone, as I typically keep it on meeting mode. I was sitting in the bleachers with my co-leader while we waited for the meet to begin. And then my grandma called me and asked if I would like to place the pall at Aunt Teresa's funeral. I was very honored to be asked. We chatted a little longer and then said we'd see each other the next day at the visitation. Until reading the above passage, I hadn't thought about that phone call since it happened. I realized it was the last time my grandma called me. She was diagnosed with stage III multiple myeloma a week after Teresa's funeral and died a month after that. I spent countless hours with her between that phone call and her final moments. But there's something about that phone call that is so precious to me, even though I couldn't tell you what else we talked about or how long the conversation was. She called with a special purpose. She called to thank me for the ways I helped throughout Teresa's time on hospice and the day she died. And she probably ensured that I wasn't driving while I talked on my cell phone- one of her biggest concerns, second only to whether or not I had a sweater or coat to keep me warm in cold temperatures. Ironically I remember little about placing the pall at Teresa's funeral. I might have handed it to the priest and then a few of us placed it on the casket. I do remember feeling odd about playing a part in a Catholic funeral since I and my immediate family are not Catholic. (Imagine how I felt when I and my cousins Clara and Emily carried the elements to the priest at Grandma's funeral! I can assure you we did not partake.) I haven't allowed myself to write much about my Grandma's death but lately I've been flooded with different memories. Maybe that means it's time to write now what I couldn't write then. My grandmother radiated love and I miss her. I am thankful to remember this forgotten moment.
Thursday, October 29, 2009
Wednesday, October 28, 2009
Tuesday, October 27, 2009
"We aren't there yet, but close," she said.
As my blog's title states, I'm a social worker, not a nurse. But even I know from reading that if the patient cried and became extremely anxious when needing to urinate and requested to go to the bathroom repeatedly, it just might indicate a UTI. How on earth could they have missed that? Why would a psychotropic be the first response and why would it come before a psych eval? And why would medical health professionals need to be trained to look for medical issues before resorting to psychotropics? It just doesn't make sense. I look forward to reading Part Two tomorrow and hope that this investigation will lead to change.
Another interesting article concerned the rise in indigent burials, by 30%, in Chicago this past year. Indigents are buried in Homewood Memorial Gardens, if they have not been identified or if family cannot be found or do not have funds (or are unwilling) to pay for burial. Some financial assistance is available. For people who were on or were eligible for public aid, Illinois Department of Human Services reimburses funeral homes or the family after the funeral, allowing $500 for burials and $1,100 for funerals. The Cook County Veterans Assistance Commission buries any honorably discharged indigent veteran, up to $600. Homewood buries indigents at a cost of $235 per body. What is impressive is that they do not just bury these people, they also memorialize them and allow mortuary school students to participate in the process. Consider these words: "We do not know the circumstances in their lives that brought them to this grave," said Kowalski, also an instructor at Worsham College of Mortuary Science. "Many may have died in poverty, others may have simply outlived their families. Our beginnings do not know our ends."
Monday, October 26, 2009
The argument then becomes whether one can assign an age cut off, as seniors are not "one size fits all." Some medical experts believe that if a senior is healthy and would be a good candidate for treatment, then they should take the test.
An important question for seniors to consider is what they would do if cancer is found. If they would not pursue treatment, then there is no need for screening. If however they would want chemo, radiation, or surgery, then they should ask to be tested. Above all, a senior must advocate for their wishes either way.
On a lighter note, I went to visit a patient in a group home this afternoon. The other residents are quite demented. As I visited my patient, one woman looked directly at me and distinctly said: "I don't love you...but I don't hate you." Later she was railing on about how "I am not a vegetarian!"
Wednesday, October 21, 2009
Monday, October 19, 2009
Sunday, October 18, 2009
SOMEWHERE BETWEEN HEAVEN & EARTH
by Cindy Bullens
I curse the night
I watched you slip away
Wouldn't have done no good
To beg you to stay
You were here beside me
But now you're gone
I'm just trying hard
To carry on
But there's no rhythm in the rain
There's no magic in the moon
There's no power in this pain
Til somewhere between Heaven and Earth
I can find you again
Hearts are broken
And dreams are lost
But I made a promise to love
At any cost
Little did I know
The price was so high
In the blink of an eye
There's no rhythm in the rain
There's no wishes in the stars
there's no power in this pain
Til somewhere between Heaven and Earth
I can hold you again
If I could one more time
Feel your hand in mine
Hear your voice call my name
And whisper sweet good night
Then there'd be rhythm in the rain
There'd be magic in the moon
No such thing as love in vain
And somewhere between Heaven and Earth
You'd be with me again
And I could see you again
And I could hold you again, my baby
Somewhere between Heaven and Earth....
I will see you again
In terms of society's view of death: "It's not that I object to my death; I just don't want to be there when it happens." -Woody Allen
We're on the same path as our clients when we're in this line of work. We must face our own losses and face our mortality.
Grief is like phantom limb pain.
The best gift we can give the grieving person is to recognize that we do not know what this experience means to them and to communicate that we are willing to find out and understand.
Your task when you are grieving is not to let go but to find a different way to hold on. Death ends a life but it does not end the relationship.
Monday, October 12, 2009
CMS started collecting data in 2007 and will launch phase 3 on January 1, 2010. Hospice providers will then be required to list visit lengths and number of visits by physicians/nurse practitioners, nurses, social workers, and aides, as well as PT, OT, and ST, and the length of phone calls made by social workers that are related to the terminal illness. It is well worth noting that complete comprehensive documentation by the interdisciplinary group (IDG) members is even more critical now that so many governmental systems are watching hospice providers. Documentation provides evidence of the care provided, verifies the quality and coordination of care, ensures continuity of care, shows compliance with various regulations and organizations, provides substantiation of the sequence of care in the court of law, and provides the basis for service reimbursement. (Ah, yes, it always comes back to money.)
Documentation should tell the patient's story in a legible, complete, and consistent way. The story begins with the initial assessment of the patient's needs, as well as the needs of the family or caregiver. IDG members should consistently and objectively document the patient's and family's/caregiver's status and the state of their environment each contact. There should be 1) a complete description of interventions provided to the patient and family or caregiver, 2) the patient's pain and symptom presentation and interventions and evaluations, 3) communication with the MD, other IDG members, and any nonhospice professionals, and 4) the observed or verbal responses to interventions and care.
Stay away from vague, inconsistent, and contradictory statements about the patient's status or clinical interventions. Avoid using these: "continues slow decline," "remains hospice appropriate," and "needs more care." Make sure the hospice team is seeing the same thing, i.e. the RN documents that the patient is ambulatory while the aide lists the patient as bedbound.
Comparative charting is a best practice method. Comparative charting contrasts the patient's present condition to their prior condition. This also individualizes the patient by looking at their specific trajectory of decline and presenting specific information instead of generalizations. Assessment of the terminal condition should be emphasized and also include any comorbidities that impact the prognosis. There should also be an individualized description of the patient's status as it relates to the terminal diagnosis. Examples can include documenting any limits to daily activities for a patient with CHF or describing the use of oxygen for a patient with COPD.
My organization is currently examining how we document and trying to streamline the process. Social workers and chaplains started using Assessment-Intervention-Plan as a guideline for our clinical notes. It was an adjustment at first to figure out how to structure the clinical note, since I was used to a free form narrative. However, now that I've been doing it for about 2 months, I love it! Each visit, I copy the old note in to the new one and tailor it to the visit I just made. It serves as a refresher for what I've been working on with that patient and helps me keep my plan of care more current. I don't know what Medicare will throw at us next but I think my organization is ready to meet the challenge.
Thursday, October 08, 2009
A 2 minute video in which Bruce shares thoughts from his journal in regards to having cancer:
Tuesday, October 06, 2009
Saturday, October 03, 2009
In any case, here are some of the ways I try to maintain confidentiality:
1. Under my blog title, it states that patient names and identifying information has been changed. This is in accordance with the great and mighty HIPAA.
2. Patient names on this blog are never close to their actual names, which is sometimes a shame because I could never make them up. Sometimes I use TV or Movie characters, random initials, or a random name.
3. I vary ages, sometimes accurate or sometimes a general "in their 70s." It depends on why I'm sharing the story.
4. I usually give an accurate diagnosis unless the diagnosis has no bearing on the story.
5. I struggle with how much to share when it comes to a patient's background or family dynamics. I find those aspects to be so compelling that I want to tell it all but I have become better over the years at picking and choosing what to share. If a patient's story is one of a kind, then I tend to change all the other information.
6. When pictures are included (i.e. Bucket List patient), permission is always requested first.
Like the other social work bloggers, I never share a story that I did not experience myself. I originally thought this blog would be a good outlet for me to process the hospice and bereavement worlds but it has grown in to something more. I am honored that someone would want to read this blog and that my clumsy words might be of use to them. I appreciate all your feedback and insights. If you ever think I am not safeguarding my patients and their families, please let me know! We could all use a good reminder once in awhile.
Any suggestions or pointers for how you protect patient identities while blogging?
Thursday, September 24, 2009
This afternoon I met with a spunky lady, her hired caregiver, and her daughter. The patient has just returned to her home after a year of hospitalizations and nursing home stays. She is so happy to be back home! Her daughter has seen a big improvement in her mom since she's been back...the power of being in one's own home. This patient is very hard of hearing and almost blind so the daughter and I talked about what we can do to bring enjoyment to her days. I'm referring her for a volunteer, pet therapy, and music therapy, plus I'll be visiting every week. I talked to the daughter for awhile about family involvement. The daughter has handled all the details of her mom's care and transition back home. One would assume that she is the POAH but she told me that her brother is the POAH, in fact. She said that he really doesn't do anything other than sign the papers; he is content to leave the details up to her. I talked to her about this and she is at peace with her role. She asked, "Isn't this what daughters do?" Daughters are overwhelmingly the primary caregiver or decision maker for their parents but I don't think statistics lessen the impact of this role. Both of these situations are complex but at the heart of the matter, these daughters are doing their best for their parent, regardless of the toll it takes on them. It's beautiful to witness.
Tuesday, September 22, 2009
Bernie stabilized within a month after that post and we discharged him from our program. I loved visiting him and his wife but the business of my schedule prevented me from ever dropping in on them to say hi. We did lose touch. A few weeks ago hospice chaplain Ron thought he noticed Bernie while he was visiting a patient at a nursing home but didn't have time to investigate. This morning (while I was adjusting to being back at work after 10 glorious days off) he told me it was indeed Bernie; he ran into Bernie, Mary, and their daughter last week and was able to catch up with them. I was caught off guard when he told me that Mary had asked if I was still single and wanted Ron to let me know that their grandson was still available. She specifically told Ron that it was more than a year since Bernie had been discharged...so surely it would be OK for us to date. I could not stop laughing when he told me this! I think Mary wanted Ron to call me right on the spot when they were chatting. So flattering that this family would think this highly of me. Nevertheless, I think I'll pass. It was a nice way to start the day though!
Monday, September 21, 2009
Thursday, September 10, 2009
Luckily, the Richard Petty staff stepped in, lifting him in and out, making sure he was settled safely. In the Ride-Along, Jim rode shotgun as a professional took him around the track 3 times, getting up to 160 mph. Jim described this as one of the great thrills of his life.
Unfortunately, I was not able to go, as I had a patient in crisis that day. Jim had a DVD made though and when you watch it, it feels like you're right there in the car with him! Jim is still working on his List. Currently we're trying to find a DVD that will help him improve his bridge game. It may be one of the tamer items on the list but I'm sure Jim will be glad to cross it off and move on to the next item.
Sunday, September 06, 2009
Drew's biking partner was Danny Leonard, a 69 year old two-time cancer survivor. He shares his story in the video below. Their trek ended mid-June but Drew's blog is still worth reading. They met many people impacted by Danny's story along the way and it appears they learned a lot about themselves as well. In the process, they were able to raise awareness and money to support The Leukemia and Lymphoma Society. It's no longer possible to donate directly to Danny's Ride but perhaps consider training for an event of your own. I would highly recommend any of LLS's fundraising programs, from Hike for Discovery to Team in Training.
When I first read that passage, I cringed knowing how the words might be interpreted. Unfortunately people often take TV-portrayals to be reality; the way the reporter writes, it might appear that Preodor is trying to scare the patient into signing the DNR. Of course, he is doing no such thing. The public is generally not aware of the side effects of CPR on a healthy person so why would they consider the risks to someone whose health is already compromised? I had to go through CPR certification for work a year or so ago and was surprised to learn that people often throw up while receiving CPR. I already knew that it's not uncommon for a rib to crack or break during the process. Yes, lives can be saved through CPR but it is not an easy, magical process. (At least from this social worker's perspective.) I think it is important for patients to be aware of how their condition affects the effectiveness of CPR.
The article then highlights Someone to Trust, which trains facilitators to lead advanced care planning conversations in the Chicago area. Their long-term goal is to significantly increase the number of Chicago-area residents participating in advance care planning prior to a healthcare crisis. Someone to Trust notes: "While advanced care planning (ACP) can include advance directive documents, it is also an ongoing, living conversation and decision-making process between patients, families, designated agents and medical practitioners where end-of-life medical wishes are discussed. If initiated while the individual is capable, these conversations provide needed information and give the individual time necessary to understand and interpret the information in the context of her or his own values and goals." It's important to have organizations out there that can assist people in formulating their wishes. These conversations must continue regardless of their coverage under the proposed health care plan.
Finally, yes, that is our very own healthcare blogger, Dr. David Fisher who is quoted in the article.
Friday, September 04, 2009
Wednesday, September 02, 2009
PCGR now has subscription options; you can follow by email or RSS feed. An aggregated feed of credible, rotating health and medicine blog carnivals is also available.
The latest article in the New York Times series "Months to Live" has generated some interesting feedback in the blogging arena. Check out Christian Sinclair's insightful response to "Breaking the Bad News" over at Pallimed. Gail Austen, president of the American Academy of Hospice and Palliative Medicine, sent this letter to the editor noting an important distinction about palliative care.
Kristy Richardson has kidney cancer. What makes her unusual is that she apparently never had surgery or treatment. Here she is, 22 months after her diagnosis. She's not had an easy go of things, what with being denied Medicaid and Disability- from what I can tell, this is why she hasn't had surgery,etc. Cancer rant is also worth looking at.
Hospice Physician is a wonderful addition to the blogging world. It was tough deciding which posts to feature. Read "Are They Really Dying?" and "Congratulations You've Graduated Hospice."
Are you tired of asking patients to rate pain on a 0 to 10 scale? How to Cope with Pain has some thoughts on that issue.
Dr. Muriel Gillick shares her thoughts after reading a New York Times Magazine article from 1950, "Recharting Life for an Aging America." She notes that there's been a change in perspective but questions: "Is the result really that Americans today fail to accept that death is inevitable? Or do patients appear to believe that death is optional because physicians seldom discuss life’s final stage and continue to offer treatments, even if they are of little or no benefit? For all the lip service paid to informed consent and joint physician-patient decision making, older patients seldom understand their likely trajectory with and without a particular treatment."
The Eldercare ABC Blog has a wealth of information regarding, you guessed it, elder care. Of note is the article on what will happen if one does not have a DNR. The author offers practical suggestions on how to let people know what your wishes are, especially once you are unable to express them yourself.
SocialWorkEmergency shares this story about a woman whose father had a poor prognosis. She was not ready to withdraw care and it seemed her father had not left Advance Directives or discussed his final wishes so the hospital had to respect her decision in the end- although some of the staff took the badgering approach.
And if you weren't already convinced that Advanced Directives are important, David Fisher, MD, MPH lays it out on the line with "The document that is more important than a living will." He writes: "If you were to become very ill, unless someone has a copy of your living will, it may never be followed. It is much more powerful to have a living, breathing advocate (your Power of Attorney for Health Care) who understands your wishes and can help guide your doctor through the myriad of possible scenarios that can occur if and when you become ill." It's important to note that you do not need a lawyer or notary public for the form to be legal and Dr. Fisher kindly includes links so you can print off your own copies.
What if you don't think your loved one will follow your wishes? Cooking with Dee suggests that you take care of the paperwork well in advance. She shares how her sisters overrode her mother's wishes until her mom could finally and firmly tell everyone she did not want any more treatment. This has impacted how she and her husband view the eventual ends of their own lives. "We will both do our own papers and sign DNR’s because we don’t trust each other to let the other go. I know that in my heart." The presumption is that with the paperwork in place, the spouse will indeed follow what it says- it takes the guesswork out of the process. I hope that will be true if and when they are in that position.
Wings of Madness focuses on the ins and outs of depression, offering information, news, and support. There's also a support forum for those struggling with depression. Of particular use is the article "What to Do (On and Off the Web) While You're Waiting for Your Antidepressant to Kick In." A fair amount of palliative care and hospice patients are put on antidepressants but there is sometimes a concern that there's not enough time for the medication to be effective or that it will take too long to work. This article addresses hands-on ways people can deal with depression before the medication kicks in, from music and book suggestions to ideas on self-care.
Kieran is a writer with terminal lung cancer. He opens up about his experience with therapy. I love that he says he doesn't really need to see a shrink but that he does need help in dealing with the things happening in his life. I'm of the belief that everyone could benefit from having a nonbiased listener in their life and I'm glad Kieran has found his. His mom recently died amidst some changes in his own health. He writes poignantly of his grief while laying in his hospital room.
The Naked Soul invites us to accompany him on his spiritual journey. Hardships Along Our Journey is relevant for ourselves and for the people we serve.
Family History and Dynamics
Daughter of Cancer, whose mom had glioblastoma, shared what to say and what not to say before her mom died. This particular blogger notes she is a private person and will not often share her feelings with family and friends- hence, her blog. This is what makes her openness regarding her grief so compelling. Here she talks about how she tried to disengage before her mom died and wondering what the rest of her family is feeling.
Hospice Doctor shares the story of a 20 year old patient with a rather dysfunctional family. "A couple of weeks ago, another relative who helped care for Helen told me that Helen was an angel who'd been sent to earth to fix her mom. Unable to do that, Helen had to leave...We all search for meaning as we confront the unspeakable. It occurred to me that I had no better explanation for this tragedy."
Should a well partner separate from the sick partner? An advice columnist recently gave the OK, in a post featured on In Sickness and In Health. That kind of advice gives me the willies!
The New Old Age Blog looks at the way divorce can complicate caregiving situations. Blended families can mean more elderly parents to care for but also more complicated family dynamics.
Culture and Ethnicity
The Masked AMHP works in a Community Mental Health Team in England. "Lost in Translation" discusses the need for an interpreter for a Portuguese girl who could not hear. I've heard of sticky interpretation situations but this one might take the cake!
Nursing homes get a bad rap, which is not always justified. Unfortunately, if you've worked in the healthcare industry, you've likely experienced a bad nursing home at some point. Jonathan Rosenfeld's Nursing Home Abuse Blog holds nursing homes accountable for their care, with the goal of improving quality of care for their residents. He recommends America's Best Nursing Homes if you're trying to find a long-term care facility for your loved one.
I'm grateful that discharge planning is a very limited part of my job. Setting up caregiving or finding a bed at a nursing home that meets someone's specifications is never easy in my experience. My hat is off to the medical social worker at The Unburdening who deals with demanding families and does her best to meet their "needs" every time.
I would be remiss if I didn't take a moment to focus on family caregivers. They are the unsung heroes of end of life care. I appreciate the honesty and vulnerability found on Dying to Help. "My Mother Told Us There'd Be Days Like This" and "Hurry Up and Die" highlight the difficulty in caring for a loved one. We are ready for the burden of caregiving to end but we are never fully ready to let go.
GeriPal has a great take on family caregivers, referring to them as the Silent Long Term Care System. I should note that GeriPal is another site that has so many relevant posts, it was hard to know how to categorize them!
Resources In Use or Needed
Often patients needing palliative or hospice care are no longer able to work. They may be eligible for Social Security Disability but it's not always an easy process to apply. The Social Security Disability Blog answers just about every question one could ever have about the system.
Stop by Dream Advocate, a social work grad student who is starting her second year fieldwork placement at the Health Care for Homeless Veterans program. This might not seem like it would have obvious ties but over the years I have worked with veterans who were either homeless at some point or recently placed at a facility before coming on board with hospice. The VA does offer good assistance if one has time to navigate the paperwork and the system. I'll be interested to hear what situations Dream Advocate finds herself in and any legislation created to help our veterans. Maybe she'll give us tips on dealing with the VA! Also check out her thoughts on the book Anti-Cancer: A New Way of Life- she never posted a full review but she does share some interesting thoughts.
Coping Skills & Self-Care
I adore Carl Witten's blog "A Pastor's Cancer Diary." It was seriously difficult to figure out which posts to share and how to categorize him. "Laughter Yoga" is certainly an interesting concept. In "Resilience" he compares the effects of cancer treatment with the PTSD experienced by soldiers in combat, noting that "Cancer need not be a life-shattering experience, no more than a tour of duty in a war zone needs to be. Both experiences are difficult, even life-changing. Yet, both are survivable, psychologically speaking." "The Breadth of God" examines how a serious illness can deepen faith with a wonderful passage from Rabbi David Wolpe.
Everyone Needs Therapy shares a friend's experience at his mother's funeral and offers insights on the expression of emotions at funerals. There is a difference between public and private grief/mourning; there is not one "right" way to do it. We often want to present a brave face during times of sorrow but we should also allow our friends and family to share those emotions with us. ENT is a great mental health resource and covers a variety of topics.
LCSW Mom works in hospice and as a crisis clinician in a trauma center. She shares a reflection read at her grandmother's funeral.
Ever consider holding your funeral before you died? That's just what Judi (Life as a Hospice Patient) did recently. She has a full recap here on the events. It sounds like it was a lovely celebration that captured Judi's spirit and advocated her cause.
Quilting is an interesting form of memory making. It can be hard to let go of a loved one's favorite t-shirts, ties, or quirky dress. We want to hold on to the memories but we don't always have the space. Converting the clothes into a quilt of blanket can be a therapeutic exercise, creating a lovely keepsake along the way. This blogger created a quilt using her stepfather's favorite t-shirts and sweatshirts; it's touching to read about the associations with each item and the author's description of her and her mom's grief. This woman writes about wanting to make a quilt using her baby daughter's clothes and then realizing she's not ready yet.
Sarah talks about the pain of going through her mother's clothes and finding the nightgown her mom wore when she died. She plans on making a quilt for herself and her two sisters, thanks to the kindness of a woman named Sue. Read here and here to see Sarah's mental preparation/state for going through the clothes. Sarah faces infertility along with mourning her mother's death; she is very honest and candid about all that she faces, making her blog a must-read for me.
Malcolm Payne of St. Christopher's Hospice in London writes Social Care/Palliative Care, a social work at the end of life blog. I would be interested to hear what people think of Payne's thoughts on the need, or possible lack thereof, for bereavement assessments. He writes: "We in the people-working professions have defined something perfectly natural as a problem because we have sometimes come across people who have problems with it. There’s a bigger risk that we’re propagating unnecessary involvement in services than the risk people run by feeling sad when someone important dies."
Other odds and ends:
Linda Mock, a hospice RN, has set up a R.E.S.T. (Receive Enough Support Today) to acknowledge the professional stress of working in hospice. Symbolic Loss resonated particularly with me. It often seems I do not have a chance to process the loss of one patient before being presented with 3 new admits.
Social Work Blogs has links to social work blogs of all kinds- a very handy directory.
BlogCatalog has a Death and Dying category. Not all the links belong there (I saw one blog on weddings!?!?) but I found a bunch of great new resources, too.
Next month's Rounds will be hosted by GeriPal on Wednesday October 7. Be sure to check it out!